Coalition Letter to House Ways & Means re: Patient Privacy

The Honorable William M. Thomas ChairCommittee on Ways and MeansWashington, D.C.

The Honorable Charles B. RangelRanking Minority MemberCommittee on Way and MeansWashington, D.C.

Dear Mr. Thomas and Mr. Rangel:

We, the undersigned organizations, urge you to support the Emanuel-Doggett Amendment to HR 4157 at the Ways and Means committee markup meeting on June 15, 2006. Our organizations represent constituencies from across the ideological and political spectrum, and we urge you to include basic principles of patient privacy in any HIT legislation.

Our coalition’s privacy principles are as follows:

Recognize that patients own their health data

Give patients control over who can access their personally identifiable health information across electronic health information networks

Give patients the right to opt-in and opt-out of electronic systems

Give patients the right to segment sensitive information

Require audit trails of every disclosure of patient information and allow patients to review those disclosures

Require that patients be notified of suspected or actual privacy breaches

Provide meaningful penalties and enforcement for privacy violations

Deny employers access to employees’ medical records

Preserve stronger privacy protections in state laws

The Emanuel-Doggett Amendment embodies the key privacy principles that our non-partisan Coalition for Patient Privacy has been urging Congress to add to health IT legislation.

Americans must trust the health IT system, before it will work. They must have confidence in the system. They must have confidence that the personal information they share with healthcare providers will not be disclosed to others. Research informs us that unless patients are assured of privacy, they will avoid treatment and tests, they will lie about their symptoms and health issues, they will omit critical medical data, and they will delay care, endangering their health because they know their records will be used and shared without their permission.

There are countless stories of people being harmed and discriminated against when others know information about their healthcare treatments. People have lost current or future jobs, been kicked out of college, denied insurance, denied credit, lost their identity, and harmed in immeasurable ways when the private information they told their healthcare providers became known to others who used the information for reasons that have nothing to do with healthcare or payment.

Who benefits when patients don’t have privacy? Not patients.

Please assure Americans that they can trust any health IT system by incorporating privacy principles into HIT legislation. We believe that building a national electronic health system without ironclad patient privacy rights is a prescription for disaster.